Adrenal Seizures

I haven't posted a lot on here really so hello to everyone. I was wondering if anyone could relate to these symptoms I get - as on my other forum noone had heard of it.

Basically I get these attacks that I call "the judders". It starts with a wooshing, like butterflies in my chest or that feeling when you drive too fast down a hill. Then I go really lightheaded and my blood pressure drops and the wooshing spreads up and down my body, arms, legs - like an esctacy rush gone wrong. And my whole body starts to tremble and shudder and I feel this feeling of FEAR, intense fear and panic and I cannot sit still, I figit about like I am crawling out of my own skin. Then my heart rate goes mad and has been recorded at 140 bpm.

My doctors equate this to a panic attack/depression/social phobia, the usual story for M.E sufferers.

So my parents sent me overseas for tests as my doctors refused to refer me for any endocrine testing despite a year of symptoms and me blacking out all over the place and it turns out I have low cortisol, ACTH Insufficency and they ran a 24 hour urine test to check the adreneline levels in my body which came back inconclusive.

One doctor said it could be POTS related the other said it might be a tumour on my adrenal gland. But neither specalist had heard of these symptoms before. Before I flew back to the UK the doctor said it was important I get an MRI on my adrenals.

I am completely baffled as to what the cause might be. My heart rate sits at 110bpm resting and goes up to 140/150 when doing really normal things like boiling the kettle. It's all getting worse.

I am in the process of being referred to a POTS specalist but my GP is still refusing to refer me to an Endocrinologist and my parents are going mad.

I don't get anything like what you described but I do have the heart rate variability problems. The thing is that my resting heart rate, unlike what you reported for yourself, can be quite reasonable, 70 to 75, if I'm well rested and sitting in the recliner. But then if I have to stand still for a minute or two it can go as high as 150. I've had two abnormal tilt table tests that indicate NMH (Neurally Mediated Hypotension), another form of orthostatic intolerance. Neither tilt table tests showed enough heart rate increase for a POTS diagnosis in my case. But I wonder if maybe now I've got POTS, too? Not that I want anything new! sigh.

Anyway, I decided to respond to lend you some moral support more than anything else (no one else had responded yet and I was here on this forum posting my own question). Sorry I can't be of more help to you.

Good luck with your POTS testing and with looking for an endrocrinologist. You'd think that having those abnormal test results with cortisol and ACTH would be enough to warrant a referral to an endocrinologist.

I'm sorry to hear how unhelpful your doctor has been - mine was beyond useless too.

Like me, you live in the UK, so I think you basically have two options: Register with a new GP, or go see a private GP. The advantage of a private GP is not only are they more inclined to listen to what you and your parents have to say, but they will almostly certainly write you a referral letter, in this case for an endocrinologist (you will have the option as to whether you see the endocrinologist privately or on the NHS). Another advantage of a private GP is that you (the patient) arrange the appointment and your NHS GP need never know - this means the private GP won't have access to your medical records so can listen properly to what you are saying instead of what some other doctor has previously thought about you. On the down side, they won't have access to any test results either, so you will need to make sure you take copies of these with you to the appointment.

I knew that adreneline and POTS are related somehow....I get juddery like that (gosh that was horrible to watch) when I have an attack but I can't remain in the same position as my body flounders around all over the place. I suppose only the POTS specalist will shed light on it all...

I am going to register with a new G.P - a letter from my current one arrived in the mail this morning stating NO MORE REFERRALS. My parents went to them begging and pleading and he put in a separate letter to them that he will not discuss the situation with them - even though we had contacted the specalist already who has contacted the GP on our behalf requesting I get referred...and they STILL won't budge.

The nearest private G.P is 25 miles away...I did see a private G.P in London when I first got ill and they were the best doctors I have ever seen.

I don't know what advice to offer, but I had exactly this same experience when my CFS was new. My tachycardia was sometimes measured at 250!!!
It was terrifying and and one of the nastiest sensations I have ever experienced.

After about 5 years the attacks gradually diminished in intensity and frequency. Nowadays I sometimes get them but nowhere near as bad.

Anyway I don't have anything intelligent to say other than that I am certain it is caused by CFS in some way.